Wednesday, October 12, 2016

Content Note: Discussion of depression, mention of suicidal thoughts.
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My general plan in
writing these blog posts was that I would conclude with Acceptance on 26th August, the 20th anniversary of my becoming ill. I
suppose it is fitting that the last several months have been pretty
rough and things didn't go according to plan.

The forth stage in the
Kubler-Ross model of grief is usually described as depression, but
I'm going to talk about sadness. Depression and extreme sadness are
different but despite many attempts to draw one, there's no magical
dividing line between the two. Both can cause physical pain and
profound exhaustion, both can damage one's physical health, quite
apart from the ways they effect behaviour. Either one can lead into
the other.

However, in general:

Depression may
feature a great mix of negative emotions including extreme sadness
but also raging anger, prolonged anxiety, panic or profound
numbness. Extreme sadness is more often mixed with more positive
emotions, like nostalgia, gratitude and love - sadness can be
bittersweet, depression not so much.

Depressive
reasoning tends to lead to more extreme, pessimistic and
strongly-held conclusions. A non-depressed sad person may feel
despair that life has irrevocably changed, and wonder how on Earth
they will be able to cope. A depressed person may feel certain that
life is and will remain unbearable and they will not be able to
cope.

Depression is more
likely to be unrelenting. A common experience when someone first
realises they're depressed is that they're in a situation where they
would usually expect to feel much better - in the company of good
friends, doing something they love etc., and they still feel
completely flat or on the verge of tears. Sad people inevitably feel
out of place in situations where others are happy and celebrating,
but it may be more possible to temporarily lift one's spirits. In
the same way, a sad person may feel that others understand and
support them, while a depressed person may feel very extremely alone
- feeling either like a burden to their loved ones, or suspicious
that others don't truly know or like them.

Although it is
impossible to draw a neat line, it is important to consider the
differences; sadness can be horrible but depression can be dangerous.
Because the lives of people with chronic illness - whether physical,
mental or a bit of both - are often difficult, it is easy for both us
and other people to mistake depressive symptoms as a normal response
to our primary condition or even part of that illness. A bit of a
tangent, but an important point.

The Kubler-Ross model
is an imperfect model of what happens to everyone coming to terms
with loss. Some people skip stages, or experience these stages in a
different order and of course, some losses, like those experienced
during chronic illness, are ongoing - we sometimes return to stages
of denial, anger or bargaining when the loss deepens or we're somehow
reminded of loss we thought we'd gotten over.

Sadness is the black
hole that the psyche holds out against if at all possible. Whether
consciously or not, we tend to go to considerable lengths to avoid
the sadness. Unlike the stages before it, sadness gives you nothing
to do; denial, anger and bargaining each push a person towards some
kind of strategy, whether carrying on as if nothing has happened,
raging against the situation or negotiating a reprieve. Sadness
acknowledges the finality of loss - even if an illness might improve,
there's a certain kind of life which will never now be lived. Sadness
is hopelessness and helplessness and as I've mentioned before, the
mind will perform all kinds of scary tricks rather that to consider
itself helpless. To return briefly to my tangent about depression, I
have experienced depression on two occasions and to be honest,
neither of these were very heavy on sadness; I was scared and angry
(mostly at myself). I was scared of feeling the sadness I could see
coming and that fear made me want to die.

However, eventually,
sadness is an almost inevitable feature of loss. It is deeply
unpleasant, of course, but it is natural and often necessary. While
we live in a culture which will, at least sometimes, tell you that
anger is useful (and it sometimes is), it is rare to hear that
sadness is sometimes absolutely vital in order to cope with loss. We
expect people to be sad, of course, but we expect that to happen in
an orderly culturally-appropriate manner - bereaved people can find
themselves subject to disapproval for grieving either too long or not
long enough (or, as is perhaps most common, fluctuating in their
grief over time).

Meanwhile, the saying
goes that you don't know what you've lost 'til it's gone - that's
never been my experience. My experience is that you don't necessarily
know what you've got until you acknowledge what other things are gone
- that other possibilities that have fallen away. For me, sadness has
been the great stock-taking; it shows you both what you've lost and
everything you have left.

Whenever I have lost
loved ones, I am reminded of how generally very lucky I've been with
the people in my life, how lucky I am with those still living, and
all the gifts my loved ones give me. Every time I grieve for my
health – or the slightly better health I was enjoying a short while
ago – I become only more acutely aware of the people and things
that make life pleasurable even when I'm stuck in bed all day and
asleep for most of it.

This was not always the
case, because for many years, I tried to avoid this sadness. If I
ever cried about my health, I would cry in fear and guilt; I blamed
myself and felt that if things carried on in this direction, I
wouldn't be able cope and I would be an even greater burden on the
rest of the world. Part of this was because I believed I was useless
and worse health always meant a greater degree of uselessness. In my
first marriage, my worst health meant an escalation of abuse. But
part of this was because I never allowed myself to actually think
about what I had lost within that panicked grappling around for
answers.

I've been especially
conscious of this during the last several months when I have been
having a long crappy patch. I'm having to give up my editing work at
The F Word. I've achieved very little work of any kind. Small fun
projects and social engagements have fallen away. A painless
complication caused a bit of a cancer scare - only a bit of one, I was fairly sure I didn't have cancer – which took a lot
of energy to get checked out and put me in something of a morbid
state of mind for a few days here and there. I got sad.

However, when September
arrived and I began to think about the autumn, I was looking forward
to the months ahead. And to be honest, for most of the time I've been
ill, I would have been in a complete panic. I would be thinking about
the theatre tickets I have for the middle of October* and despairing
that I might not be able to go, and it will be a huge waste of money
and a grave disappointment to myself and other people. I would
probably, even this early, start to worry about Christmas – whether
I could be better by then, or whether my ill health would mess things
up for other people. I would be panicking about the last four months
of the year and how little I had achieved this year so far, and how
another year would pass without meeting X, Y or Z objective.

And of course my life
is much better now than it has ever been, so there are lots of
reasons why I can entertain the idea that I may spend a big chunk of
the next few months in bed without feeling desperate. But part of it
is that I let myself get sad. I never used to do that. I have let
myself cry over things I have had to give up. I have let myself cry
over the uncertainty. Then I've thought about those things in my life
more reliable than my health and felt extremely grateful.

This is not a “So
really bad things are good things in disguise” argument; there are
obvious tangible ways my life would improve if my health did (and if
nobody I cared about ever suffered or died – is this so much to
ask?). All I'm saying is that the things that help us cope with
sadness are not present until that sadness is felt. I have perhaps
been lucky in my life not to be struck with any spectacular tragedy,
but in my experience, fear and guilt are a lot more difficult to
negotiate than sadness.

I'm getting repetitive
with sentiments along the lines of "our culture is pretty messed
up about this emotion" - and of course, in a way, this is
inevitable. Simplifying the breadth of human experience into
particular and thus limiting narratives is kind of what culture does.

Modern philosophies are
particularly bad with sadness. There's a whole world of books and
seminars dedicated to positive thinking which involves eliminating
negative thoughts - or even a bodged-up version of Buddhism which
places the responsibility for all unhappy feelings at the feet of
those who feel them. Even some versions of Christianity -
historically sometimes too accepting of sadness and suffering - now
demand that followers face every negative event with a smile because
it's all God's plan and those who lament their experiences somehow
lack faith.

Disabled people find
ourselves in a double bind with this sort of thing. We are expected to be sad people, perhaps especially people with chronic illness who
have lost a non-disabled life and who have debilitating and sometimes
demoralising symptoms. Many disabled people actively resist that; to
be sad is to give in to the problem – to give in to the stereotype.
Many many disabled people are encouraged instead to stay in earlier
stages of the grieving process; to stay in denial and pretend that
things will improve at any moment, to dedicate one's time and energy
to regimes and therapies which promise to bring about recovery, to
not “give up”, to get angry and stay angry in order to “battle”
illness. In other words, we are pressured to live up to another
stereotype.

Stigma is also a
problem. Some people with physical chronic illness who've been
through dismissal and misdiagnosis live in fear of being perceived as
even slightly depressed. And many politicised disabled people don't
want to be seen as being sad about things they know to be morally
neutral facts of their experience - facts for which are
automatically met with pity and unwanted sympathy from strangers. It
can feel like being sad – or certainly expressing sadness - about
our impairments is somehow letting the side down.

On the other hand,
sadness is often portrayed as a romantic or heroic characteristic,
something which leads a brooding genius to stare out the window, a
single tear staining his cheek. We're pretty uncomfortable about
depression as a chronic messy illness, but there is a significant
element of our culture which regards sad people as deeper thinkers,
more sensitive and empathetic - so long as we don't see them crying
in public or wandering the streets in dirty clothes.

And
often, people with some kinds of chronic illness feel obliged to, to
some extent, perform their role as an unfortunate ill person. Not
necessarily for sympathy (although perhaps sometimes, for a good
cause – you never see anyone raising Awareness in newspapers
and magazines with a smile on their face). But more often, I think
this performance is simply for peace – fed up of hearing that they
don't look or seem sick, or of newspaper stories about benefit fraud
whose headlines amount to Disabled person seen having a good
time, there's a temptation to show the world that you're
suffering.

I know some people are
really afraid of their lives looking too good; too comfortable, too
happy. And this is also about our unequal society in a more general
way; marginalised people of all stripes who seem to be having a good
life are those who most offend bigots – as Chimamanda Ngozi Adichie
says, "There
are people who dislike you because you do not dislike yourself.”

Happy disabled people
are, after all, the least deserving of pity and for some people, our
only purpose is as objects of pity to make non-disabled folk feel
good about themselves. Unhappy disabled people are far less
provocative (at least if their unhappiness is relatively quiet and
passive).

All this risks
undermining authentic psychological reactions to the losses we
experience through chronic illness. We are stuck between a tragic
rock and a plucky hard place.

It's not that we
shouldn't feel sad (or angry, grateful, defiant, whatever) – but
that we should give ourselves emotional space to feel whatever we
happen to feel. We should reject both tragedy and the triumph over it
as personal narratives.

Because I feel sadness
is largely something we must ride out rather than something we need
to work through, here are some tips for managing sadness - not
for curing it, or moving on from it, but managing sadness rather as
you might care for a physical wound:

Attend to your physical
comfort.

Make sure your diet is
as pleasant and nutritious as possible, that you are keeping warm (or
adequately cool during those few days of the year when it's a bit too
hot), are wearing attractive comfortable clothes and are spending
your time in as comfortable a position as you can manage. If
possible, work out some appropriate physical exercise and keep to
it. When possible, get a little sunshine and fresh air. Don't fight
the temptation to sleep unless you have a good reason to. If you have
one available, have an attractive person rub lotion into your back.

It's really amazing how
much physical comfort effects mood; I remember my mood once
transforming after I changed my socks when one had a hole in it - I
hadn't really noticed the hole, but the world seemed considerably
more bearable in its absence (if you donate items to homeless people
or refugees, priorities good strong socks).

Do not try to avoid
negative thoughts or universal sadness triggers.

You can't avoid
negative thoughts. You can promote positive ones. You can talk about
your negative thoughts and get a better perspective on them. Just
writing down your negative thoughts can help you begin to sort them
out. However, even when negative thoughts are irrational and
unhelpful (which, you know, they aren't always), they can't simply be
willed away, or drowned out with loud cheerful music.

Folk sensibly attempt
to control their exposure to material which upsets them, but this is
only possible for fairly specific material - like avoiding graphic
depictions of a particular kind of violence or checking whether thedog dies. Trying to avoid things – thoughts, stories,
conversations, news etc. - which are sad is not only a futile and
miserable exercise, but also a recipe for anxiety. Even if you're
not feeling sad or reading about something sad, something may come up
at any moment to change that. So you're left feeling on guard and
unable to fully engage in anything new or potentially interesting.

I find it helpful to
consider passive activity like the music playlists I put together. A
good all-round playlist has a combination of fast and slow tracks,
upbeat and sadder songs. If you're reading, watching TV or whatever,
then sad content will come up even in comedies and children's shows
(especially children's movies - goodness me!), and that's okay so
long as it's part of a mix. Material which is interesting, where
you're learning stuff, or which allows you to have a conversation
with other people (now or later) is also very good.

Express your sadness.

When someone you love
died last month or even five years ago today, it is entirely socially
acceptable (if not always easy) to talk about your sadness. With
chronic illness, when sadness effects us can be fairly random – or
at least random to other people who don't see whatever events have
triggered the spell. However, I strongly recommend trying to tell
someone, just so this thing can be heard and acknowledged. Failing
talking to a friend, write about it, compose a song, draw a sad
picture to get it down in some form. It is when sadness is not
expressed that it is most likely to fester and mutate into something
else; something bigger and messier. Not just a fresh depression,
which is a risk, but also common or garden bitterness and resentment.

Look forward to small
events which will happen.

It's probably an
instinctive habit for people with chronic illness to look forward to
the next meal, the next episode of a television programme or the next
chapter of a book, but it is sometimes necessary to do this
consciously. When you feel sad about the way your life is, it can
feel pathetic to get excited about the small stuff, but the small
stuff really is amazing. We live in an amazing world. That's not a
reason not to be sad - terrible things happen in this amazing world
of ours - but it is a reason to value all the joy we have available
to us today. The sun will rise in the morning and the flowers will
bloom in the spring. If possible, plant some bulbs.

Keep a record of your
gratitude and pride.

This is hard but helps
me a lot when I'm struggling at all. Get a notebook or allocate a
text file and towards the end of each day, write down something
you're grateful for and something you're proud of. It doesn't have to
be anything amazing - you might be grateful for having a nice warm
pair of socks and proud that you wrote out a birthday card. If you
have more things to feel grateful for or proud of, write them all
down. This does not cure sadness or any other negative emotion, but
it allows you to focus, regularly, on good things you have in your
life and good things you have in yourself.

* At the point of publishing, having pretty much resigned myself to abandoning the theatre trip, it looks like it might actually happen. Hooray!